Behcet's Disease

Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

Would love to hear your experience! Feel free to share in the comments below.

P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients: rarediseases.org

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
#MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
#morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

“Be gentle with yourself” is my new motto. I have been battling several autoimmune diseases for over a decade now. I was always the type of person that never stopped moving, always busy. When I started to become really ill six years ago with Behçet’s, my world was turned upside down. I could no longer do all of the things I used to do and started to feel extremely guilty. Daily mundane tasks, like cleaning, became virtually impossible for me to do.
For years, as my health declined, so did my mental health. I became depressed and I always felt like I was being judged by those around me. Being lazy was not in my nature, but I feared that others would see me as being just that.
On various occasions, I would push my body too hard and then would make myself sick for days afterwards.
Eventually, I came to realize that in order to justify my illness, I was making myself sicker.
Now, I listen to my body. When I am not feeling well, I rest. When my body tells me “no more,” I stop. I have learned that taking care of myself is essential if I want to have any semblance of a life. For those of us who are chronically ill, we have to learn that putting ourselves first is not selfish, but a necessity. So remember: be gentle with yourself and take care of you. You are worth it. ❤️

It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

Let me know in the comments below 💌

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #MightyTogether #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
#MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
#morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder